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Tuesday, October 23, 2012

The fatal flaw in living wills

Oct 18, 2012

By Andy Ho, Senior writer

ANYONE aged 21 or over and sound of mind may make, free of charge, an Advance Medical Directive (AMD) instructing doctors not to use "extraordinary life-sustaining treatment in the event of his suffering from a terminal illness". This is what the AMD Act, enforced from 1997, stipulates.

It was recently disclosed that about 15,000 people had signed up for the AMD by last year. An AMD kicks in only when the terminally ill patient can no longer communicate, at which point the attending doctor is to search the AMD register to see if he has one signed. To ask a still-lucid patient if he has one signed is criminalised by law.

You may revoke your AMD at any time and five people did so in 2010, for example. But while all AMDs are registered, revocations need not be. The AMD can be revoked by signing a prescribed form, but also "orally or in any other way in which the patient can communicate". So attending doctors can't be sure that a signed AMD has not been revoked. Therefore, legal experts say, doctors may not rely upon an AMD since no one can be certain it has not been revoked.

This legal no-man's land cries out to be cleared, some lawyers say, but it may be a good thing because it affords space and time to re-examine the moral grounds for AMDs, in case they are flawed.

An AMD is the pre-commitment to control future events by choosing in the present to reduce one's options in responding to various situations later.

The paradigmatic pre-commitment case is Ulysses in The Odyssey, who has himself securely bound to the ship's mast before sailing past the Sirens. He pre-orders his men, whose ears are pre-plugged, to refuse his deranged orders to sail nearer when drawn by the Sirens' singing. If the ship is not to be dashed on the rocks, they are to do what he has commanded while competent because those orders reflect his authentic preferences.

Likewise, pre-commitment by AMD looks attractive if you worry about having a dignified and merciful death in an era of costly high-tech medicine. It quickly became the focus of the "death with dignity" movement in the 1990s and was quickly taken on board by clinicians and legislators.

It also seems consistent with the rights to autonomy, bodily integrity and privacy. These rights afford all persons, competent or not, the choice of accepting or rejecting life-sustaining therapies. Above all, it is the person's autonomy, including autonomy over future treatment, that is stressed.

New York University legal philosopher Ronald Dworkin argued in Life's Dominion (1993), a work foundational to this argument, that the good life includes "experiential" and "critical" pursuits. The former, say, fine wine and exquisite music, makes one feel good. The latter, like difficult work and intellectual endeavours, makes for a meaningful life.

Professor Dworkin felt that what an AMD really expresses is the latter, the moral worth of which trumps that of the former. That is, an AMD expresses your autonomy by taking care of your "critical interests" should you become terminally ill and incompetent. It ensures that your final days will be guided by those "critical interests" that have shaped your life all along.

But is feeding the senses really of lesser moral worth than feeding the mind? They are arguably equally worthwhile, or equally worthless if, in the final analysis, all is vanity anyway.Moreover, why should my prior self when I signed my AMD trump my future self when I am on life support? As a wag put it, the competent self signs a decree that says of the incompetent self "Off with her head", and the physician is the executioner, wearing the AMD over his head as a hood.

Does my earlier self trump my later self just because it was prior in time? Why is my earlier self the true self and my later self not, whose best interests can be deduced by my closest ones when I am no longer competent?

Even if we are not a succession of different selves but really the same self over time, there is no reason why the future me cannot also have a say in what the present me does. Since I know I may regret in the future what I am doing today - pre-committing to my own death sentence - why should I sign an AMD today?

Fans argue that we frequently deny ourselves a slew of future choices by the commitments we make in the present. When I decided to get married, I cut off all future choices of female consorts the single man has. When my wife and I decided to have children, we cut off things we could have had like a bigger house or fancier car.

Only by making such commitments can we pursue what matters to our lives. I got married despite knowing that divorces were getting more commonplace, so the regret that a hypothetical divorce would entail in my future did not thereby prevent me from getting married.

It is expressing my autonomy in making important choices and commitments that shape my life.

It is also expressing that autonomy when I revise my life plans. Now my children have finished college, I have more degrees of freedom to do what I wish, say, change careers, with no more tuition bills looming ahead.

But notice that this is all about commitments whereas pre-commitments thwart myself from autonomously re-appraising, in the future, my past commitments to see if they need to be changed. If it is indeed my autonomy that justifies my making such commitments, then pre-commitments, by precluding commitments that I could make in the future, actually functions against my autonomy.

My life plans change in part because my preferences change over time, but we do a poor job of predicting how ours will change, especially in contexts we have never experienced. Empirical research suggests that people cannot tell how they will respond to a future health-care problem until they actually live it.

Many patients' preferences change during hospitalisation - and again a few months afterwards. A 2002 New England Journal of Medicine study concluded that "there is little evidence that patients can anticipate their choices under future circumstances in which death is imminent".

Thus, AMDs are based on a flawed model of patient autonomy. And the stress on this flawed instrument has detracted from the traditional approach that, if or when we became incompetent, we accepted our vulnerabilities and that it was at such a point that close kin would step in as our surrogate decision-makers.
And given the context of a terminal illness, we would have developed a trusting relationship with the attending physician. We trusted our kin to know our values and preferences, so together with that attending physician, they would ascertain we got useful treatments while also shielding us from the affronts of excessive medical intervention.

It is time we got back to this approach where dignified care was a family decision, not a predetermined individualistic one.[I think it is idealistic at best. The point of the AMD and not its flaw is that in an emotional situation, family will make decision in THEIR best (emotional) interest. They will want their fathers and mothers to hang on, just for another day, another week, to see their first grandchild, to see the new grandchild, to see their grandchild graduate, to see him get married. There is always another milestone in life, another family event, another thing to experience.

When making a decision for a loved one, we tend to err on caution. We tend to try to maximise options for our loved ones. That is why parents drive their children to excel in school because good grades offer more options, and low grades, low qualification limit options.

Similarly, being alive keeps options open. Pulling the plug close options for our loved ones.Moreover, a decision to pull the plug on a parent could possibly be seen as being unfilial. Not trying everything, not impoverishing the family in order to extend the life of a parent for even one minute, would be seen as unfilial. A loved one near death is an emotional situation. Not everyone can make the decision with equanimity. Even professionals may not. In this article, doctors chose to extend life for a patient though in the same situation, most would not want life extended for themselves.

Doctors know about futile care and can do more to help people to die with dignity. AMD is not the whole solution, but it helps.

If the point of Dr Ho's article is to argue that AMD is NOT for everyone, then he is on firm ground. If he is attempting to argue that the AMD is flawed for EVERYONE, then that is a sweeping statement that is almost certainly wrong.

Dr Ho's solution is to "trust" our kin, trust our family members would make the right decision for us. But the burden we put on our family to terminate our lives is a heavy one. And the psychic shadow it casts can be long.

An AMD can relieve the family of that burden. It is also an expression of a person's view and value of life, and the person's expression of the value of their family that they do not wish to burden them with a terrible, difficult decision.]